The quality of life, the relationship between research and treatment, the end of life. These are the three topics at the center of training events on amyotrophic lateral sclerosis promoted by Aisla (Italian Amyotrophic Lateral Sclerosis Association) in the month of May and intended above all for professionals and healthcare workers. The event dedicated to the continuity between research and care will be held in Rome on 23 May. The meeting (‘Criticalities in ALS’) will deal with the pathogenesis of the disease and the repercussions that the complexity that characterizes it has on the conduct of clinical trials and their therapeutic efficacy. “ALS is an incurable disease but it is treatable. A cure can be understood as any approach that improves the quality of life of people with ALS”, says Stefania Bastianello, Aisla technical director.
On May 25 in Palermo, the initiative will be dedicated to the end of life (“End of life, a still open question”). At the center of the meeting was the theme of palliative care aimed at alleviating the person’s physical, psychological and existential suffering. “ALS is the paradigm of care complexity: a communication path is necessary between the treating team and the sick person so that the latter has a time for knowledge, one for elaboration and one for choice”, comments Daniela Cattaneo, palliative care doctor of Aisla.
The appointment of May 19 in Faenza has instead been postponed to a date to be defined and will be rescheduled for autumn 2023 with the title “To Care not to Cure”, focused on the theme of the quality of life of the person with ALS and his family.
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